This is my first time writing about the rare type of epilepsy I have. Its called Jeavons Syndrome and its started with the eyelid myclonia when I was 3 years old. Doctors first thought my eye movement was tick or even autism.
When I turned 13, I started my period first time. Thats when the big grand mal seizures started to go crazy. The sun is what is triggering my seizures. I always have to either wear glasses or just be careful. If my eyes were fluttering too badly, I would have to always hurry and go inside. I know no kid wants that. They want to be able to be a kid, but I didn’t get that much. I’m also photosensitive to any kind of light apparently.
What I found out about this syndrome is that it is incurable and medicine resistant. I have five different types of epilepsy and, honestly, I’m 28 and don’t even know if I can have a life or when mine will just be safe and happy.
I have eyelid myclonia, petite mossizers, absent seizures, grand mal, seizures, and staring spells.
I know its hard. I’ve been going through it since age 3. I feel like we need to research more about Jeavons, so people can understand it’s very difficult to get around when my eyes do flutter. It’s like I’m half blind. Not a lot of people know about Jeavons syndrome but you can all go look it up and learn. I’m just grateful to be alive still.
What a cure would mean for Brittani
It would be an amazing dream come true if my epilepsy was cured. If I was okay and didn’t have to worry my family, I could actually do what normal people do, like drive, go outside, and have fun without feeling like I’m a mistake. Just actually loving and accepting my syndrome because that makes me special and unique. 😊